23-06-2018 02:00 PM
Hello! I am new here! I am Swedish but living in Spain. 45 years old at diagnosis. I have got a weird one for you; I was diagnosed with BC "In Situ", 5 mm, ErPr+, Her2- (neg), grade 2, clear margins, no vascular invasion, no necrosis. Had surgery begining January 2018. Since the lump was palpable, during surgery (lumpectomy), they also took out a 3 lymph nodes, 1 had micrometastases, and 1 had ITC. The doctors where perplexed, where did these micrometastases come from? The pahologist searched and searched; finally they found a tiny Micro IDC, 0.18mm. It could, due to the small size, not be tested. I did not get chemo, but had 20 rounds of Radiation. I did change oncologist after that. My old oncologist was a very unsympathetic person, older, and seemed kind of tired of his job. Anyway, fast forward, my new Oncologist, head of largest BC clinics in Spain (Madrid and Barcelona), working in many EU countries and the US (researching), said it was too late for chemo, but decided that I needed Herceptin. Yes, you read right; Herceptin! I argued that my In Situ was Her2 Negative, but he said he "didn't care" about the In Situ lump. But that if a 0.18 mm tumor can send metastases to lymph nodes, it is a very very agressive one; therefore a big chance of being Her2 Positive. He did say that he agreed, they do not know, and that they are "fumbling in the dark" with me. But that he thinks that the side effects of taking Herceptin, outweight the risk of this 0.18 mm tumor being Her2 Positive. I get Herceptin in injections. So far no side effect whatsoever. They said he injection would hurt a lot, but it didn't hurt at all. Doing heart screens and blood tests. We will see how it goes. I am in a very "grey area", and it doesn't feel good at all. But anyway, I am getting Herceptin every 3 weeks for 1 year, without chemo...
08-04-2018 07:10 PM
I had my surgery first BUT mine was tiny 3mm or as big as a peppercorn. If your tumour is large compared to your breast then many surgeons want you to get the chemo first because then you might have less invasive surgery. Sometimes the chemo makes the cancer melt away completely and and other times it shrinks it to a great extent.
07-04-2018 05:36 PM
Chemo+Her prior to or after Mastectomy
I have had similar indentical diagnosis
ER+ 4 PR 0 HER2+ 3+
Invasive Grade 3 , DCIS Grade 3 not exercised yet, but the WLE didnt deliver clear margins and as the DCIS was not 16mm as advised but 32mm will be requiring further surgery but after treatment
The plan always has been to have Chemo + Herceptain and it's taking ages already 30 days and yet to be n by an Oncologist such a challenge to get appointment so unlikely will get chemo within 50 days. Am at a Central London Hospital
My Question to you and anyone else is did you have your Chemo+Herceptain prior to Mastectomy or after
28-02-2018 09:56 PM
Really sorry to hear this Shona and wish you best of luck with your treatment going forward!
I am on my last herceptin and have followed your exact path - altthough I had a mascteomy and reconstruction. It's only last week I realised that i could get a reocurrance in my reconstruction so will need to be really vigilant
24-02-2018 04:32 PM
I don't want to be the voice of pessimism here but I should point out that Herceptin doesn't always guarantee a successful treatment. I've had chemo and 18 herceptin injections for my Her2 positive tumour. My tumour was completely destroyed by the chemo and I had a lumpectomy. The histology confirmed there were no tumour cells left in the tissue and my lymph nodes were all clear. The week before my last Herceptin injection, I was very suspicious that all was not well and I have just been told that the cancer has returned. It has not responded at all to Herceptin. To say I was devastated is an understatement but I also didn't realise there was the possibility that the tumour cells wouldn't respond to Herceptin. I don't recollect that ever being mentioned so I guess I just assumed it always worked. So I'm now back on this roller coaster journey. I really wanted a mastectomy first time round but because my reponse to chemo had been so good, the surgeon talked me out of it. Hindsight is a great thing but sometimes you need to really go with your gut instinct.
11-02-2018 12:41 PM
11-02-2018 12:40 PM
11-02-2018 12:37 PM
Herceptin without Chemo
I’ve read a couple of posts where people have had Electrochemotherapy with herceptin. My cancer is on the chest wall, and i asked about this but was told I could not have E/C
Can someone tell me at which hospital, consultant where someone has managed to get electro chemotherapy alongside herceptin. The treatment at my local hospital has been terrible with very arrogant oncologist who wont even follow me up now. I have to see someone else I know, but so desperately want to find someone sympathetic to my wishes and beliefs
I do not want full dose chemo which is the only thing being offered to be me at the moment
09-02-2018 04:22 PM
Please try and remember that the doctors dont give you chemotherapy for the fun of it, it costs the NHS thousands. The aim is to keep you alive. If they suggest it then go for it. Chemo is not pleasant for any one but it can be done. Side effects vary greatly between people. I had a bad time with it but am still pleased i had it as it has given me a better chance of life. Be grateful it has been offered. 18 doses of Herceptin is not a walk in the park either, you might as well get the whole lot over with, give yourself the best chance possible and get on with life.
09-02-2018 02:28 PM
There have been trials which show that 3 injections (so 9 weeks if 1 every 3 weeks) is as good as the standard 18 injections. In some parts of the world that is what you get.
Also there are trials going on right now in the UK to see of 9 injections so half as much treatment offer the same advantage as the standard 18 injections.
The cost and the fact that it can damage your heart are reasons for giving less. There is not much point in making you free of cancer if you die from a bad heart after all.
So there are lots of very clever people all over the world looking into all of these treatments to see what is the best for most people at a reasonable cost.
09-02-2018 02:17 PM
Herceptin cannot be prescribed without at least some chemo. The reason for this is because chemo was in place long before Herceptin and it was used alongside chemo NOT INSTEAD of chemo when it was being trialled. This was because if it did not work by itself then those women not given chemo would have advanced too far and likely be dead because they would have been given a drug which did not work.
Those were the ethics prevailing at the time and those ethics are still prevailing now. This is because there have not been enough trials of Herceptin alone on sufficient numbers of women worldwide to enable it to be offered without chemo. It might work for early stages but how early? It might work for some age groups or ethnicity's but which ones? It might work if you are triple positive and need tomoxifen (or similar) but it might not. There are too many questions and not enough answers.
The bottom line is they don't know if it works without chemo but they do know that it works with chemo.
05-02-2018 01:42 PM
05-02-2018 01:31 PM
02-01-2018 09:16 PM
I was diagnosed Her2 + with no lymph node involvement. It was aggressive grade 3 so I had EC chemo followed with what was supposed to be 9 weekly paclitaxol but I had an allergic reaction to the 2 nd dose so had 3 x3 weekly Abraxane chemo . I started on Herceptin the day before I started the Paclitaxol chemo and this week I am about to have my last of a total of 18 doses. I had a mastectomy and 3 weeks of radiotherapy too. Everyone responds differently to treatment. You have to trust your oncologist.
06-12-2017 07:43 PM
01-12-2017 02:51 PM
Hi, I was dx with IDC, Her2+, 1.5 cm in left breast and had a lumpectomy. I am curious to know if you did have Herceptin only rx and how the therapy affected you?
Hope you are doing well!
17-10-2017 02:22 AM
I've been looking for anyone who received Herceptin w/o chemotherapy. There is also some research showing 9 weeks of Herceptin has the same results as 1 year, decreasing the negative impact.
Can you please share more? Where are you located?
Thank you so much.